Give Seriously ill Children their Childhood Back

Dear Friend,

My little baby girl Emily was a total joy. She arrived nearly 5 years ago and was the most perfect little addition to our growing family. So placid and easy-going. Our son Cormac was completely smitten with her. We were so lucky that straight off the bat there was no jealousy. And at only 16 months, he took to the role of big brother like a duck to water.

For the first three months, everything was completely normal. I was just coming out of what they call that ‘fourth trimester’ - adjusting to juggling a new baby and an energetic toddler, when I started to get really worried about Emily’s colour. Her skin was quite yellow and jaundiced looking, from time to time. I took her to our local GP in Waterford and before I knew it, we were in Cork University Hospital getting bloods and a scan. You hope you’re just being over-cautious. An anxious mother. That it will be nothing. But it wasn’t.

The scan showed that Emily had a rare condition where her gall bladder and bile ducts weren’t ever fully formed. It meant her bile wasn’t draining fully and was attacking her liver. I can’t tell you what an unbelievable shock it was. We had to transfer to Dublin for a biopsy two days later. A week later, we were in England for a very serious procedure. The doctors removed Emily’s gallbladder, and replaced the blocked and not fully formed bile ducts with segments of her intestine to try and get the bile to flow again.Sadly just 6 weeks later they confirmed this was not a success. Emily was put on a waiting list for a lifesaving liver transplant, she was only 5 months old!

The whole thing was the most terrifying whirlwind – everything just spiralling out of control. I don’t think we properly took a breath - properly relaxed and started living again – until our first trip to Barretstown three years later. Barretstown is such a special organisation. It sees how much illness hurts - not just the sick child, but the whole family. And in our family, one of the people it hurt the most was Cormac.

When Emily ended up in hospital battling for her life, I dropped everything to be with her, like any mother would. I had to be by her side, every step of the way. Through three hospitals, two countries, emergency surgeries, a life-saving transplant, and all the treatments and medications that went in between. But that meant leaving my son Cormac, who was only 19-months-old at the time - not for days, or weeks. But for months. And to this day, it’s one of the most soul destroying things I’ve had to do as a mother.

I’ll never forget the night before we transferred to Dublin. My husband Sean stayed with Emily in the hospital in Cork, so I could come home to put Cormac to bed. To spend what little one-on-one time I could with him before I’d to go. For who’d know how long. I tried to shield him from it, but Cormac saw how upset his mammy was. The worry, the fear, the red and puffy eyes from crying – it was written all over my face that something was very, very wrong. And then Emily and I disappeared from his life. My husband and our extended families were amazing while I was in hospital with Emily. They did everything they could to step in and fill the gap. But still, a little boy needs their mam. There’s just no getting around that.

We are lucky – in the modern world of technology, I could see Cormac and talk to him every day, using video calls. But over the months, over our calls, he saw Emily get worse and worse. The tubes. The colour of her skin as she reached end stages of liver failure. He felt the highs and lows of our emotions – from the euphoria when a family friend was a match to give a live donation. To the devastation, when last minute it had to be cancelled, twice! When we were home, it was rarely for long. I always had a bag packed. Emily might get a bit of a temperature, or we might pop to the hospital to get a routine blood test. And not come home again for another few weeks. Finally, when Emily was 19 months old, the transplant with our live donor went ahead. Our incredible friend John gave us the most unbelievable gift – a part of himself, to save our darling baby girl. 

After, I just couldn’t wait to get home from England. I just wanted us all to be together again. To be back on Irish soil, at least, for Cormac’s third birthday. But an awful complication, a week later, left Emily fighting for her life again. She made it through emergency surgery but was in ICU, intubated under heavy sedation for a week. I remember video chatting with Cormac at the time. He just couldn’t understand why Emily couldn’t wake up. Couldn’t talk to him on the phone. Why there was a tube in her mouth. I can’t even describe to you the physical hell my little girl went through on her journey. But she had me with her 24/7. And many teams focused on her and getting her better. And she did. She still has an underlying condition and rejection is always a fear. But she’s out the other side now - happy and thriving.

It was the emotional hell my little boy went through, that was far less obvious. He was left with scars people can’t see. It was so traumatic to have his mammy and baby sister disappear out of his life. And to feel all the adults so worried and upset. To grow up surrounded by an air of anxiety and fear we could never fully hide. It’s those scars that Barretstown has played such a part in healing. 

When the doctors first suggested Barretstown to us, Cormac was really struggling. He is quite a hyperactive child. And was finding it extra hard to control his behaviour. There was a lot of tantrums. And constantly pushing boundaries and testing them. All kids do, but with him it was at a different level. I think he was really struggling to feel safe - that we weren’t going to just up and disappear on him again. He’d get anxious if we suggested leaving the house. And worst of all when he was upset, I couldn’t really comfort him. Because the hard reality was – that while I was his mam, and he knew that I loved him unconditionally - I hadn’t been there as his primary hands-on caregiver for a chunk of his life at that point. And when he had a nightmare or a grazed knee – it wasn’t me that he looked for. It was my husband. Or even my sister, or mum. That was really tough.

Barretstown has played a huge part in helping us reconnect as a family. Helping us rebuild trust in that bond. And letting me step back in as mammy again. Properly. It started with Barretstown Live, while Covid lockdowns were in place. They’d post us out these boxes and we’d tune in together and do the activities with the volunteers. And even though it was a workaround until they could open properly, it was actually ideal for us. Because that’s what Cormac had most missed. Having me at home. And Barretstown Live helped us to create new special memories as a family, all together in our own home. Laughing and giggling. Building, cooking and crafting.

Then when restrictions allowed, we went to our first in person camp. It was incredible! Cormac and Emily just loved it. It was so amazing watching them play crazy golf together. To groove outside our cottage when the volunteers brought our dinners up. To switch off from all the worry. To watch our two beautiful kids sparkle again - so happy just being kids. It also gave me and my husband Sean, time together in the evenings. To catch our breath and take stock of where we were. And all we’d been through. I felt like I’d been holding my breath for years. Waiting. Hoping. Struggling. Worrying. And just surviving. At Barretstown, we started living again. It lifted the most exceptional weight off our shoulders. 

For the first time in a long time, you could see Cormac feel and trust that he had his mammy back again. Barretstown gave us hope and lightness. Special memories. And most importantly, the connection with each other. It’s just magic. We got to go back in April this year for our second camp, the kids still talk and tell stories about their time there, it’s never far from their minds. This last time, with covid restrictions eased even further, the dining hall was open again, so it was fantastic to see everyone together and feel the magic of the singing and dancing. And even now, they are still breaking out some impromptu handshaking, wiggling and singing for their dinner at home. Toys and gifts are great. But it’s when you have the chance to spend time one on one with your child –to sit down and be at your ease with them – I think that’s what really makes a child live their lives. That’s what they cherish. That’s what Barretstown allowed us the space and freedom to enjoy. To help the whole family heal. 

Thank you for supporting Barretstown and making it possible for families, like mine, to heal after a serious illness. What you give families like ours, is so much more than a weekend camp. It’s what we bring home from Barretstown that’s life changing.

Warmest regards,

Ann-Marie Byrne - proud mum to Cormac and Emily